Factors to Consider in Life Care Planning and Future Needs for Spinal Cord Injury
Factors to Consider in Life Care Planning
A thorough and comprehensive review of the medical records from the acute care hospital stay and the initial rehabilitation stay should be performed to obtain the most accurate information available regarding the medical history and treatment of the client from time of injury as well as the complications the client has experienced that can have an impact on future medical needs. In addition, a thorough review of the most recent records from physical therapy, occupational therapy, and other providers will provide valuable clues to the person’s current functional status and equipment needs and will occasionally reveal complications. When reviewing the medical records, there are key items that should be searched for, since they can and do alter the future medical needs of the patient. In addition to the complications noted previously, the following is intended to be a partial list of important topics and issues to glean from records that can have an effect on life care plan entries.
Knowing the neurological level of the patient is crucial as a starting point to determine future medical needs. Therefore, careful review of the records should be performed to determine the exact neurological level and completeness of the spinal cord injury. If this cannot be determined from the records, then the life care planner must obtain an accurate neurological level from a knowledgeable physician. In addition, knowing and describing accurately the neurological level of the patient serves as a baseline in the event that there is a change in the person’s neurological status so that the change can easily be recognized by the caregivers.
Comorbidities and other medical complications and problems of the patients are extremely important and can impact the life care plan. Complications such as coronary artery disease, peripheral vascular disease, preexisting renal disease, chronic obstructive lung disease, and diabetes mellitus have a significant interplay with the effects of spinal cord injury. Preexisting conditions can become much worse when combined with spinal cord injury and dictate that a higher level of care be provided. Some conditions, although not related to the traumatic spinal cord injury, are seriously complicated by the traumatic spinal cord injury and therefore mandate that the life care plan provide a higher level of care as a result of the spinal cord injury. For example, the insulin-dependent diabetic who becomes tetraplegic requires an increased level of attendant care to monitor blood sugar and give insulin injections, even though diabetes is not directly related to the spinal cord injury.
Preexisting disabilities combined with spinal cord injury can have a synergistic effect and require higher levels of care than would be required by the presence of either disability alone. For example, the blind individual who becomes paraplegic will require a much higher level of attendant care than the average paraplegic.
Functional Independent Measures (FIMs)
FIM scores are used to communicate the level of independence of the patient in many areas. The scores generally are obtained while the patient is in an inpatient rehabilitation setting or participating in a rehabilitation program. The scale ranges from Level 7, fully independent, to Level 1, which requires total assistance. The rehabilitation record typically will reflect FIM scores in several areas, including dressing, bathing, grooming, transfers, medications, bowel and bladder, and mobility. If the FIM score is 5 or less in any category, then attendant care is needed to assist the patient in that area. While FIM scores are not the only way to determine what personal care services are needed by the individual, they are an excellent way to establish a baseline and provide objective documentation of the need. FIM scores considered along with level of SCI, and many other factors, will help determine need for personal assistance services (PAS). (Also see the following discussion.)
Review of the records can also determine in part what equipment needs the patient has and what equipment needs have been met at that point. It is not necessary to recommend the exact same type and style of equipment that was recommended by the hospital, but it is important to review what has been provided to the patient and when it was provided prior to making any future recommendations. The equipment provided to or recommended for the individual may be a function of resources available rather than what was indicated or needed.
Various types of durable medical equipment (DME) will be required, although the amount and style depend on the level of injury and the competence of the patient. A life care plan should address wheelchair needs, home and ramp modifications, environmental control systems, equipment maintenance, security systems, transportation needs, cellular phones, and other appropriate equipment.
Position and posture are important variables affecting SCI performance. Problem solving and seating recommendations require a good working knowledge of physical impairment, wheelchair adaptation, seating systems, and the person’s needs. Due to the complexity of the issue, an analytical working method is required (Bolin et al., 2000).
Equipment should also be provided to allow the individual to maintain an active exercise program. Persons with higher-level spinal cord injuries, who are unable to voluntarily move their muscles, may be appropriate for functional electrical stimulation units to perform this activity for them. Functional electrical stimulation (FES) equipment has been around more than 20 years and has undergone significant refinement in recent years. Gittler (2002) provides a brief discussion of indications and costs of several options. Phrenic pacers improve pulmonary function with the basic hardware cost of $50,000. Vocare is designed to improve bowel and bladder emptying, with a hardware cost of $40,000. The Freehand II system, the Handmaster, and the Tetron Glove provide grasp, or key grip and release function, for individuals with C5—C6 tetraplegia, costing approximately $50,000 each. Although the Freehand system is apparently no longer manufactured, a number of units are reportedly available for implantation.
See http://www.aetna .com/cpb/medical/data/300_399/0378.html, which reports that the Freehand system is approved for coverage by this major insurance carrier effective February 1, 2000, and was last reviewed on July 29, 2008. See also www.neurotechreports .com/pages/ SCImarket.html, which suggests that neither the Freehand nor VoCare are available anymore. Each of these FES systems will require surgical or nonsurgical placement, training in its use, and ongoing maintenance/replacement cost. A variety of FES devices are useful in maintaining cardiovascular health and improving lipid profiles in spinal cord injury (Wheeler et al., 2002).
Psychological and Social Adjustment
The rehabilitation and acute care records should provide information on family support and the patient’s psychological adjustment to the disability. Patients who cope poorly or fail to complete initial rehabilitation are at much higher risk for experiencing complications and problems and will require a more intensive level of service in the life care plan. In addition, identifying social activities that were important to the patient prior to the spinal cord injury and establishing alternative ways to participate in these activities for the newly injured person are important goals of a life care plan.
Future Needs Functional Outcomes
Data from current SCI model systems show that the trend for acute inpatient care for individuals who sustain a SCI has significantly decreased. From 1974 to 2005, there had been a 40% reduction in length of hospital stay (from average 25 days to average 15 days), and an even further reduction in days in the rehabilitation unit from an average of 115 days to 36 days (National SCI Statistical Center, 2008). The implications of this for the life care planner are that individuals who receive a traumatic SCI are being discharged sooner from the hospital and rehabilitation unit than previously, with an expected result in less functional outcomes. Therefore, the functional status of the patient is crucial in projecting future equipment needs and, specifically, personal assistance services needs. Careful consideration to the needs of a patient must be given and every attempt made to accurately represent the number of personal care hours that are required. PAS needs can represent the single most expensive part of the plan for individuals with higher-level injuries. For example, individuals who are ventilator-dependent tetraplegics require 24-hour care. If PAS are purchased through an agency, care that is at least on the level of a licensed practical nurse (LPN) will be provided. In many cases, there are no LPNs trained in ventilator care, in which case an RN will be required (check with the agency within each state with regard to its policies on this topic). At the other extreme, an individual with lower-level paraplegia may be self-sufficient with a few hours of homemaker services. Underrepresentation of PAS needs will result in the patient not having adequate services to maintain him or her throughout his or her lifetime and will likely lead to a higher rate of complications and hospitalization and, in extreme cases, reduced life expectancy. Overestimating the PAS needs will result in an inaccurate, unjustifiable, and more expensive plan that is unfair to all parties involved.
There are a number of tables that can be used to provide a starting point on what a person’s functional level is anticipated to be given his or her neurological level of spinal cord injury. Comprehensive tables available include those published in Blackwell et al. (1994), Staas et al. (1993), and Braddom (1995). A more complete discussion of these issues can be found in Blackwell et al. (2001) and Harrell and Krause (2002).
These references and their corresponding tables are intended to serve only as guides in making projections about the types of support an individual will need. There are patients who will function with less care and others who will require much greater care, given their unique sets of circumstances; thus, each person must be evaluated individually. Failure of a patient to meet the projected level of independence does not necessarily mean the patient is not trying, is poorly motivated, or is malingering. The tables referred to are general starting points. However, there are specific areas in each of these tables that these authors have serious disagreements with, and we
do not, by noting them here, suggest that we wholeheartedly agree with the recommendations in these publications.
It is well recognized that the most expensive component of present and future care is the area of support services or personal assistance services for individuals with SCI. PAS includes attendant care, homemaker services, driver services, and home/lawn maintenance. Several studies have attempted to identify the average charges or expense for these services (Berkowitz et al., 1992, 1998; Devivo et al., 1995). These studies have attempted to identify cost of PAS as an average in cohorts, with questionable success. The studies do not in any way represent the actual needs for PAS. Data from these studies are not intended to apply to a specific individual. In addition to limitations of the studies, the authors warn that the data should not be used to project the future needs of an individual. The life care plan is a needs-based assessment and must be written to reflect the actual need of the person with SCI. Harrell and Krause (2002) specifically state that “it would be irresponsible, and a breach of our professional duties and responsibilities as life care planners, not to endeavor to articulate this need.” Many factors affect the number of hours of PAS required as well as the level of training required. Some include the level of SCI, age at onset of SCI, gender, comorbidities, SCI complications, duration of SCI, effects of aging with SCI, obesity, cognitive ability, compliance, and level of psychological adjustment. Guidelines for hours of PAS have been published by the Consortium for Spinal Cord Injury (1999), Outcomes Following Traumatic Spinal Cord Injury. The guidelines are not intended to be prescriptive, but are a guide to understand PAS needs in individuals with SCI. In addition, it should be recognized that projections are based on the average SCI case (i.e., young, healthy, and male).
Relying on family members to provide PAS is inadequate and leads to adverse effects on the family. Burnout, fatigue, exhaustion, stress, loss of intimacy, and social isolation are some of the more common problems (Blackwell et al., 2001). Families serving as caregivers do so at considerable cost to themselves, increasing their own risk for health problems. Caregivers who find that role stressful have a mortality risk 63% higher than noncaregivers over a 4-year period (Schulz & Beach,
1999) . Private hire of PAS has hidden costs and problems described in the article by Thomas and Kitchen (1996), “Private Hire: The Real Cost.” Harrell and Krause (2002) report that the reality of self-managed care can be burdensome and suggest, “It is often difficult to find appropriate caregivers … the identification and screening of appropriate assistant candidates is difficult even for professionals.”
In cases where a high level of PAS is required, recommending nursing home placement absent compelling reasons is considered at the very least inadequate and likely unethical. Harrell and Krause’s (2002) comments earlier about the life care planners’ obligation to develop a needs-driven report speaks to this issue. Nursing home placement typically results in a reduced quality of life for people with SCI (Duggan et al., 2002; Harrell, 2002). Duggan et al. (2002) indicate that in today’s managed care environment, a focus on cost containment has resulted in the population of individuals with SCI being discharged earlier and more likely facing nursing home placement. The national SCI model system database reveals a significant increase in discharges to nursing homes from 3% in 1977 to 6% by 1993, and such discharges may be in excess of 8% today. The authors state that “the typical skilled nursing home facility may not be equipped to provide the necessary level and intensity of SCI care demanded” (Duggan et al., 2002). The study identified numerous problems in nursing home care, such as
■ Failure of staff to answer call buzzers
■ Insufficient attention to personal privacy
| Hours per Day of Assistance by Level of Injury and FIM Instrument
Source: Adapted from Consortium for Spinal Cord Medicine, Outcomes Following Traumatic Spinal Cord Injury: Clinical Practice Guidelines for Health-Care Professionals, pp. 13-20, Washington, DC: Paralyzed Veterans of America, 1999. With permission.
Notes: a Expected FIM instrument outcomes based on expert clinical consensus.
b Median FIM estimates, as compiled by NSCISC. c Interquartile range for NSCISC FIM data.
d Personal care includes hands-on delivery of all aspects of self-care and mobility, as well as safety interventions.
e Homemaking activities include meal planning and preparation and home management.
■ Absence of routine self-care activities, or self-care that was provided haphazardly or irregularly
■ Failure to give bowel and bladder care in a timely manner, with bowel and bladder routines virtually disappearing
■ Functional gains made in rehab lost
■ Verbal and physical abuse by staff
■ Increased rates of complications experienced by the cohort
■ Repeat hospitalizations, and an overall pattern of instability
■ Lack of economic power as the reason for nursing home placement
The Supreme Court on June 22, 1999, decided Olmsteadv. L.C. (527 U.S. 581, 1999), ruling that institutionalization of a person with a disability when a physician deems community treatment equally beneficial “is properly regarded as discrimination based on disability.” President George W. Bush in his New Freedom Initiative committed to signing an order supporting the most integrated community-based settings for individuals with disabilities (Bush, 2001). In addition, the Department of Health and Human Services prepared a report for the Congress that indicates 90% of nursing homes do not have enough workers to properly care for patients (Pear, 2002). The preliminary implications by Kathryn Allen, director, Health Care—Medicaid and Private Health Insurance Issues, are available from the U.S. General Accounting Office in publication GA001-1167T, Implications of Supreme Court’s Olmstead Decision Are Still Unfolding. Nursing homes have been implicated as reservoirs of multiple antibiotic-resistant bacteria (Wiener et al., 1999). JAMA (September 1998), in its medical news and perspectives section, discusses unacceptable nursing home deaths, and reports that two-thirds of deaths where autopsy was done revealed that the causes were treatable. In addition, 3113 nursing home residents died avoidable deaths from malnutrition, dehydration, urinary tract infection, bowel obstruction, or bedsores in 971 nursing homes in 1993 alone. Clearly, recommending nursing home placement absent compelling reasons in this physician author’s opinion is unacceptable life care planning practice.
Psychological and Vocational Rehabilitation Issues
Adjustment to disability and community reintegration are crucial factors that have an effect on quality of life and longevity. Clinical depression is five times more common in the SCI population than the general population (Kemp et al., 1999). Sufficient attention must be provided in this area in the life care plan to ensure that an adequate adjustment to disability is achieved by the patient, and that he or she can resume a functional role in the community.
Vocational goals should be assessed when appropriate and require the expertise of a vocational rehabilitation counselor who is knowledgeable in spinal cord injury. Rehabilitation engineering or assistive technology also may be very useful to the client’s successful return to productivity (Weed & Field, 2001). Recreational activities have an important impact not only on the patient but on his or her family as well and attempts should be made to assess the person’s important preinjury recreational activities and to reintegrate them into these activities to the extent possible and appropriate given the injury level. For example, an outdoor enthusiast who hunted frequently may be accommodated with an all-terrain vehicle and appropriate hunting-assisted devices. Some activities may have specific benefits. For example, an individual with tetraplegia may exercise the pulmonary system with blow darts.
As previously noted, sexual adjustment and marital relationship issues must be considered in the life care plan. Berkowitz et al. (1992) reports that the rate of divorce in individuals with SCI is twice as high as in the general population. Females with SCI reported a lack of meaningful relationship, and sexuality counseling is frustrating (Pentland et al., 2002). Appropriate counseling should be provided to both the individual with the spinal cord injury and the spouse or significant other. This may require consideration for family adjustment, which is frequently an issue after spinal cord injury. All members of the family, including the children, have suffered losses and may need to have available some level of support and counseling to assist with their readjustment. Further, for individuals who either are too young or do not have a significant other at the time of SCI, consideration should be made for counseling and adjustment needs as future relationships develop.
The life care plan must ensure that the patient’s highest functional level is achieved and maintained throughout his or her lifetime. The support services that are provided have a major impact in this area. Patients should have adequate access to individuals who can assist in improving and maintaining their strength, endurance, and range of motion. They should be given the opportunity to learn advanced wheelchair skills and improved community mobility.
The patient with SCI will require physician evaluations and treatment over the course of his or her lifetime. The required physician specialties and evaluations will depend on the patient’s level of injury and individual situation. In general, every individual with SCI should have a physiatrist if one is available in the local community. Additional physicians and specialties based on individual needs that often are periodically required include urology, internal medicine, neurosurgery, orthopedics, pulmonary medicine, podiatry, and plastic surgery. Laboratory evaluations will include complete blood counts (CBCs), sequential multiple analysis (SMAs), urinalyses (UAs), urine cultures and sensitivities (UC&S), renal ultrasounds, intravenous pyelograms (IVPs), electrocardiograms (EKGs), x-rays, and magnetic resonance imaging (MRI).
In most cases, periodic physical therapy and occupational therapy evaluations will be required. Additional support services may include respiratory therapy, particularly for individuals with a higher-level injury. Biannual, annual, or semiannual spinal cord injury evaluations (depending on individual needs) by a team of experts should be provided in order to reassess the patient’s functional status, evaluate medication needs, train new caregivers, introduce new equipment and technology to the patient, reduce the likelihood of complications, assess changes over time related to aging, and improve the level of overall care provided to the patient. These evaluations can be provided in a specialty spinal cord treatment center or by a local team that is particularly knowledgeable and expert in providing these services. A systematic assessment by an interdisciplinary team knowledgeable in SCI is essential (Whiteneck & Menter, 1993). Based on the authors’ experience in developing life care plans for individuals with SCI, a potential trend in recent years has been that a comprehensive, interdisciplinary SCI evaluation at a model SCI center may no longer be the standard for every patient. Instead, an evaluation by the SCI physiatrist generally is performed with recommendations and referral for further evaluation by the various specialties. In at least one model SCI center, the physiatrist evaluation generally is scheduled first, with the client returning to the center for additional evaluations as recommended by the physiatrist. However, this does not mean to imply that the life care plan should not include recommendations for regular evaluations by qualified professionals in SCI medicine and rehabilitation, and the astute life care planner should be able to obtain costs for each of the expected evaluations separately in order to provide the comprehensive evaluation. One life care planner recently posted researched costs from a model SCI center for a client who had high-level tetraplegia and was ventilator dependent to include a total of over $21,000 for the various specialties typically included in a comprehensive, inpatient, interdisciplinary evaluation (electronic post to LCPforum, retrieved December 22, 2008, www.careplanners .net).
Transportation to medical appointments, work, recreation, or shopping can be a significant issue for patients with spinal cord injuries. Initially, lower-level paraplegics may do well with an automobile and hand controls. A Braun car topper may be adequate for wheelchair storage, or a patient may be able to store the wheelchair behind the driver’s seat. Individuals with tetraplegia or clients with paraplegia who are aging may require an accessible van with a wheelchair lift. In general, parking should be covered since protection from the elements is important for transfers into and out of the vehicle. Some vans are designed to fit into a standard garage; however, most have a raised roof that may prevent the use of standard carports or garages.
As the life care planner probably expects, supplies can be a major part of the life care plan. Catheters and bladder-management-related items, chux pads, bowel program supplies, skin care products, dilatation sticks, latex gloves, sanitation supplies, and so on will be required. A strategy to assess this need is to obtain a list of suppliers and request a printout of the products obtained over the past 6 months. This list will usually provide a complete picture, including amount, size, usage, and cost. Often lists of medications from the pharmacist will reveal forgotten complications that should be considered in the life care plan. The plan should include provisions for changes for additional supplies in the future.
Many individuals with a spinal cord injury will be able to enter the labor market (Devivo et al., 1995; Krause, 1996; Krause & Anson, 1996). The number one factor for successful employment is amount of education. As one may expect, the higher the education level, the more likely the individual with SCI is able to find employment (Krause, 1996; Krause & Anson, 1996). Other influences include level of injury, with paraplegics more likely to be employed than tetraplegics. Ethnicity also seems to play a role, with Caucasians typically finding employment more often than individuals from minority groups. With regard to ethnicity, it is interesting to note that current research reports that minority women are more likely to be employed than minority men, but Caucasian men are more likely to be employed than Caucasian women (Krause & Anson, 1996). With regard to age, people with SCI in the age group of 41 to 50 were more likely to be employed than cohorts who were younger or older. One study reports that people working at the time of their injury had a better chance of finding employment than people who were not working (Devivo et al., 1995). Of interest, only 74% of the participants in one study were working at the time of their injury (Krause & Anson, 1996). Their employment rate was 25% at the time of the study. However, even if they were not currently working, 42% of Caucasians and 23% of minorities reported working at some point since their injury. It is also noted that it may take several years to adequately recover from injury and obtain employment skills. The employment rate continued to rise for more than 8 years postinjury. Krause (1996) also notes that clients who are socially active have a better chance of employment.
Earning capacity is another related issue. Even though the client may be employed, he or she may not be working full-time. In addition, clients’ ability to choose jobs, ascend up the promotion ladder, and otherwise maximize their earning potential is likely compromised. They may also retire earlier or miss workdays due to medical treatment for complications or periodic evaluations. The comprehensive life care plan will reduce the potential for complications and provide vocational support that enhances the potential for suitable employment.
With input from a qualified vocational rehabilitation professional, the life care plan should address the costs for assisting clients with SCI in preparing for employment if work is a reasonable option for them. Potential costs to be outlined in a life care plan could include
■ Tuition and fees.
■ Books and supplies.
■ Computer technology designed to reduce physical effort (such as IBM voice type, Dragon Dictate, Kurzweil, Voice Master, smaller keyboards, keyboard panel, head points, etc.).
■ Workstations (such as AbleOffice, produced by the Center for Assistive Technology and Environmental Access, Georgia Institute of Technology, Atlanta, GA).
■ Vocational evaluation, vocational counseling, job placement assistance, job coaching, and related costs. Postplacement assistance for those clients who successfully obtain employment may also be a consideration for the life care plan in order to assure continuation of employment.
Many life care planners are not vocational experts and may easily overlook or fail to include support for this important quality of life issue. It is suggested that the life care planner include a vocational expert to address this area as a part of the team.